Acanthamoeba keratitis

What is it?

Acanthamoeba keratitis is a rare but serious eye infection that is painful and sight-threatening. It affects the clear front surface of the eye (the cornea) which becomes painful and swollen (inflamed).

Did you know?

Acanthamoeba are usually found in soil and in water, for example in hot and cold tap water, swimming pools, hot tubs and sea water.

In the UK, most people who get Acanthamoeba keratitis wear contact lenses. About 1 in 30,000 contact lens wearers become infected. It’s also possible to become infected after an injury to the cornea.

Using tap water to clean or store contact lenses or having poor contact lens hygiene increases the risk of infection. Examples of poor lens hygiene are not using disinfection solutions properly, reusing the solution in the contact lens case, failing to empty and dry the contact lens case after use and storing lenses in water overnight.

Wearing contact lenses when swimming or taking a shower also increases risk. So does putting lenses in with wet hands from tap water.

Acanthamoeba keratitis is very painful for most people but it’s possible to have no pain at all. Other symptoms include red eyes that feel irritated or like they have something in them. Some people will get blurred or poor vision. Some people become sensitive to light and find it painful or uncomfortable.

Irenie was diagnosed with the rare corneal infection Acanthamoeba Keratitis in 2011.

Since then Irenie has undergone two corneal transplants, lost the sight in her right eye, suffered scleritis and nearly lost an eye to the disease.

Irenie describes one of the most difficult things to cope with when you have a serious illness is the lack of control you are suddenly faced with.

Irenie has been under the care of Moorfields Eye Hospital and describes the team as extraordinarily supportive during the whole process, giving her as much time needed for questions and to raise any concerns about her condition. However, as Irenie's condition is so rare quite often her questions can't be answered. This highlights the importance of Fight for Sight's funded research into the condition which will improve understanding.

Irenie was involved with the Sight Loss and Vision Priority Setting Partnership. Organisations across the sector grouped together clinicians, patients, relatives and carers to set eye research priorities.

Irenie said on a personal note she found that being involved in such an important initiative has given her back an element of control over her illness. She feels more empowered to contribute to the future of corneal research.

Following Irenie's personal experience she wanted to raise awareness of the sight-threatening disease and designed a 'No Water' graphic, intended to highlight the risk of non-sterile water for lens wearers on contact lens packaging. The campaign got the support of the British Contact Len Association, which produced its own ‘No Water’ stickers for use on lens packaging. There is also interest in producing similar stickers for use in the USA.

Clearlab announced they will be the first manufacturer to adopt the label for its contact lens packaging in the UK.

Irenie’s campaigning work has been recognised as winner of the 2015 Sheila McKechnie Foundation’s ‘Health and Social Campaigner’ Award.

You could play an important part in eye research by being a participant in clinical research study that may benefit many people. You could even help shape clinical research by becoming more actively involved and having a say. Patients, carer, or anyone with an interest can help.

What are clinical trials

Clinical trials are research studies that find out if a medical strategy, treatment, or device is safe and effective for humans. They are a key research tool for improving medical knowledge and patient care. The people who carry out research are mostly the same doctors and healthcare professionals who treat people. Their aim is to find better ways of treating patients and keeping people healthy.

Taking part

Here are some ways to find out about research projects and clinical trials that you can get involved in.

UK Clinical Trials Gateway

The UK Clinical Trials Gateway run by the National Institute for Health Research (NIHR) provides easy to understand information about clinical research trials running in the UK, and gives to a large range of information about these trials. It is designed to enable patients and clinicians to locate and contact trials of interest. Visit their website and select the eye condition that you are interested in.

NIHR Clinical Research Network Portfolio

The NIHR Clinical Research Network Portfolio is a database of high-quality clinical research studies in England, Northern Ireland, Scotland and Wales. Within this the Ophthalmology Specialty Group supports a national portfolio of research studies in ophthalmology and the vision sciences. See their website for details.

If you wish to join a trial it is always best to discuss this with your doctor or clinical team first.

Last updated September 2015Approved by Professor John Dart, Moorfields Eye Hospital and UCL Institute of Ophthalmology